Re: Haven't been on this board for nearly 3 years
 

Thanks so much, girls, for all your support and encouragement. To answer some of your questions, Kiri did have followups - the protocol at Dana is to scan only when there are symptoms. So she had a lumpiness in her good breast in the fall of 2011, they MRI'd her and found calcifications, and she has had MRI's there every six months since, with no indication of anything serious. Last year about this time she had a lingering cough and they had her in for a CAT scan and her lungs were clear. A few months later she finished herceptin (I think last May sometime). She has had no symptoms of metastasis, and the only reason they found these is that she went in for a scan of a lingering cough and cold, which turned out to be nothing, but the scan picked up her lung and liver mets. I think she has one bone met. My guess is that maybe after she stopped herceptin the tumors progressed, but who knows.

She is incredibly strong and healthy and active--she is a real little warrior. Recently she took up rock climbing and progressed quickly to a 5.9 level, whatever that is. She also rides horses, and works out. She is in good weight, has a great appetite, and no physical problems. She's very active in her work, teaches at two different colleges and tutors privately while working on her PhD. Really, she is a whirlwind - I get exhausted just listening to her daily plans.

She is also VERY realistic, extremely organized, and determined to make every minute that she has left count. I so admire her pragmatism, and it's a wonderful antidote to our sentimental sorrow. She just makes you want to smarten up when you're around her. I have never NEVER seen her exhibit one ounce of self-pity, or why me? or this is so unfair. To her, it is what it is. One of her mottoes on her facebook page is from Willa Cather: The end is nothing, the journey is all.

Still, with all her pragmatism, and her initial fierce statements of reality, she is leaving room in her future for hope. For her birth announcement, my husband and I quoted the poem "Hope" by Emily Dickinson. I don't know what made me choose that particular verse. Hope is the thing with feathers/that perches in the soul/and sings the tune without the words/and never stops at all. I put it up on her Facebook wall today and she immediately "liked" it. And she acknowledges in her world the possibility of miracles, even though I am the religious one, and she is decidedly NOT. ;-) In terms of her outlook, she is a beautiful combination of both sides.

Whatever happens, I will always be grateful for the gift of her presence in our lives.

Re: Haven't been on this board for nearly 3 years
 

As a parent my heart goes out to you. I also agree that it is good advice to listen to her and to acknowledge her fears and sadness. I also understand that her oncologists need to be honest with her.
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I am also treated at the Dana Farber. I was fist diagnosed in 1998 and did not know that I was HER2+ at the time. I recurred 6 years later in 2004, two months before my daughter's wedding. I had mets throughout my lungs, liver, a 3 cm tumor at the prefrontal cortex in my brain, and in my pelvis. The mets later progressed to the bones. My son was a senior in high school and graduated a few weeks after my brain surgery. My daughter had to have her dress taken in a second time because of the weight she loss. I also have a daughter with autism who was 21.

At the time my husband asked my oncologist if I would live a year, and he said that he could give me years. Of course, we knew the reality of my situation, but it didn't hurt to receive hope. Fast forward: It is now 2013 and I am currently NED. I never gave up my teaching job and continued to work through out my treatment. I recently found a letter that my parents wrote to me to encourage me, but I could also sense their fear between the lines.

Of course, it is important to face reality and to listen to your daughter and to support her. Although it is necessary to know the statistics, it is too early to predict her journey with this disease. There are also other long term survivors here. We are not here just because we did the right thing, It is just that all HER2 cancers are not the same, and either are the hosts where it decides to settle.

Again I encourage you to listen to your daughter, and to enjoy and live the life you have together. You can still be realistic, without abandoning all hope. Your daughter is very fortunate to have your support.

Kind regards,
Barbara H.

Re: Haven't been on this board for nearly 3 years
 

I believe in miracles, lets pray she is one. Ok, roughly 10 years, that is a lot of time for researchers to come up with a cure. Lets pray for that breakthrough for all of our stage 4 girls and guys. Lets put an end to this stupid cancer soon. Don't give up hope! She sounds amazing and what a great mom you r.

Re: Haven't been on this board for nearly 3 years
 

I don't have enough swear words to convey my feelings. I am so sorry. CoolBreeze is right; she needs to deal with this in her own way. When my mother was dying of cancer, people were telling her to stay positive, not give up hope etc. She told me that made her feel very lonely, because she seemed to be the only one to accept that she was dying.She needed to get everything prepared for her death. Then she felt better and was able to live and enjoy the months that were left. She had a relatively good quality of life, after we all accepted where she was emotionally, mentally and physically. She needed to stay away from people who were in denial, because it cost her too much energy to be with them.

Having said that, there's a good chance that your daughter will live for years, but it is up to her how she wants to deal with this.

As a mom, I know this is the hardest thing to accept. I have seen one of my kids suffer from complex regional pain syndrome, which is very painful and can result in amputation of a limb. It is not deadly ofcourse. But the fear and anguish I felt for my 11 year old was so intense I couldn't breathe sometimes. I can only imagine that it must be so much harder for you. My parents lost my brother at 18, my grandmother lost her son at 20. I've seen what it did to them. We should not survive our children.

This is not just about your daughter, this is also about you, about how you deal with this indescribably sad and painful part of your life. Please feel free to come here for yourself, for your feelings, for help dealing with this, we are here for you. Just as we are here with practical info.

Love

Jacqueline

Re: Haven't been on this board for nearly 3 years
 

Thank you so much, ladies. We're doing a little better now. My husband and I are keeping busy, going for walks, and generally holding each other up (we've a rule that we both can't collapse at the same time. :-) ) We're going up toBoston early next week to be there for the biopsy - K asked us to come and be with her boyfriend, which I am very glad to do. Her bf is just a gem and we love him dearly, even though they have been together only a short time (this is not the same man she was with for her previous bout of cancer, who was also very supportive but did not include us nearly as much).

I'm feeling stronger now, and more focused. The cancer is ugly and terrifying but it is no match for love. Nothing can take that away from us, not even death. I think that is what I've been looking for, all along, not necessarily the defeat of the disease but the overpowering of it by something greater and stronger. As long as we are connected and WITH Kiri, whether we're there or here, we can fight this together and draw comfort and joy from each other. That's why her boyfriend's texts in the beginning if this, whether they gave us information or not, were so very helpful and comforting, and why every communication from Kiri now, whether she's maintaining her fierce independence or reaching out for help, is a blessing that feeds our soul. To know that there is great love and connection between us, and to feel the love and caring coming from you girls here, is our greatest and best weapon.

We are all in this soup together. :-)